160 weeks since diagnosis

Last week we wrote about the exercises Inga was doing on the swing. This week we also found a swing – but this time, Inga was able to touch the ground. It turned out that it gave her a great joy! In the end, she could, like the famous Dorotka from children’s song, “in the […]

159 weeks since diagnosis

Every day, we get caught up in the fact that whatever we do, we think about how to put some physio exercises to do when playing with Inga. When she walks in orthoses, we mobilize her to try to stick with just one hand and try to lift things from the floor. When we go […]

158 weeks since diagnosis

As we’ve already mentioned, Inga spent the entire last week in a rehabilitation camp at the Neurorehabilitation Center. In addition, she took part in hippotherapy classes in the afternoons. It’s hard for us to judge how valuable they are to Inga when it comes to strength and coordination of her movements. What we know for […]

157 weeks since diagnosis

This week means a lot of effort for Inga, who is taking part in the rehabilitation camp at the Neurorehabilitation Center. A few hours a day, she bravely exercises with many physiotherapists, to keep her muscles in the best condition and stimulate them for greater work. Believing that the drug works on Inga, we realize […]

156 weeks since diagnosis

This week has been marked by thinking about the last three years we have spent fighting against SMA. Our thoughts ran especially to the day of the diagnosis – February 25, 2016 (http://inga-figurka.pl/en/2018/02/16/2-years-since-diagnosis/).   Although so much time has passed, the memory of this day is still very vivid. It causes sadness and sorrow. The […]

3 years since diagnosis

Today around midday there are 3 years passing since diagnosis… So much have changed through this time… So much sadness, tears, nerves, uncertainty, fears of tomorrow… So many self-sacrifices and efforts to change live into better after diagnosis… So much love and happiness we hade to discover once again in our lives… So many e-mails, […]

155 weeks since diagnosis

Sometimes we do not realise how much Inga’s live is influenced by issues related to treatment and hospital appointments. Being in science museum the biggest joy Inga had in “hospital corner” of children’s city. White coat, stethoscope, ambulance and within a moment Inga became professional doctor. She knew all necessary procedures while doing blood test […]

154 weeks since diagnosis

Last week we had a winter visiting our neighbourhood. Although  it wasn’t American  polar vortex but just small frost and snow – it made our life a bit difficult. It is even more difficult for Inga – frozen wheel rails made her fingers very cold, winter jacket limit her hands movement, legs get cold faster […]

153 weeks since diagnosis

Last week Inga and her mum spent one night at hospital – doctors have ordered sleep study. Results would show how much SMA affect Inga’s breath and if there is any need for breath support at night. Inga was plastered with many sensors, which were connected to computer and monitored for 12 hours. Our brave […]

152 weeks since diagnosis

Last week Inga had several hospital appointments related to being in clinical trial. So, among others, she had basic neurological examination, ECG, blood tests, ophthalmological tests and physiotherapy assessment. Inga was very brave during all test. She says she hates blood test, but she hates eye drops most. Although she does not like most of […]